Question about IVIG infusion

[Snickers23]

Just diagnosed in January 2023. My Dr says it is too soon to order IVIG infusion for me. I want to do some traveling this summer and would hate to get sick while on vacation. What is the criteria to get IVIG and does insurance/ medicare pay for these infusions. I hear so many good things from everyone here, I would think that getting IVIG would be a good thing for all of us that have CLL, since we are all immune compromised. And if insurance does not pay, any idea how much it costs as an out of pocket treatment. I live in Washington state if that makes a difference. Any thoughts advice would be appreciated.

[Classicaljazz]

Dear Snickers23, IVIG is very helpful for those who need it, but it is not without risks (such as blood clots--which is rare but can be serious) and side effects (such as headaches, rashes, nausea, diarrhea, etc., especially with IV administration). Prior to IV admin, patients are usually premedicated with Benadryl or another antihistamine, acetaminophen, and sometimes IV hydration, and watched closely for reactions, lowered BP, etc. during the 3-6 hours of administration, in an infusion center.

The purpose of IVIG is simply to replace levels of immunoglobulin G to near normal levels in those who are symptomatic (have recurring serious infections) and usually an IGG blood level less than 400 mg/dL (normal range is 600-1600 mg/dL for most labs). The product comes from human plasma, so that supply is dependent on people donating blood within the country where the product will be sold and distributed.

If you are lucky enough to not get serious infections, then IVIG is not needed. You can ask your physician to order an IGG level as part of your next scheduled lab work, and perhaps at least yearly to see if you are staying in normal range. If you are normal now, it is a great idea to get as many immunizations completed while your immune system is in the best condition. Your immune system may or may not deteriorate as time goes on, so building up antibodies through vaccinations is a wise thing to do as soon after a CLL diagnosis is made.

Have fun on your travels, wear an N-95 or N-100 well-fitting mask when you are near others, and wash your hands/use hand gel, etc. and enjoy.

[Snickers23 in reply to Classicaljazz]

thanks for explaining. Obviously I did not know much about IVIG except all the positive feedback I read in this group.

[AussieNeil Partner Administrator in reply to Snickers23]

Further to the answer from ClassicalJazz, I gather the cost before any insurance for an IVIG infusion is about US$10,000. The IgG itself costs about the same as gold. Depending on your health insurance company, subcutaneous delivery can cost more, even though you do it at home, thereby avoiding the medical overhead costs of an infusion chair and highly trained infusion nursing staff.No medical intervention is perfectly safe and you can get infusion reactions simply because you are changing your blood volume. Subcutaneous delivery has less side effects (otherwise you wouldn't be permitted to do it at home without medical supervision), but there is still a risk vs reward trade-off.

Neil

[LeoPa]

If the doctor said it's too early you probably won't get it. It is very expensive and in short supply.

[BeckyLUSA]

I am in North Carolina. It is not just a numbers game, one also needs to show evidence of recent illnesses before insurance companies will approve IVIG. Due to the shortages of the product itself, it is not prescribed unless there are documented illnesses. Many folks have low IgG numbers but for whatever reason do not get sick that often. That being said, my original Oncologist tried to get IVIG approved for me, but could not do it. 3 weeks later my CLL specialist got it approved in 4 days. (Another reason to see a CLL Specialist!) I have been getting it at least every 6 weeks since 2016. My IVIG bill every 6 weeks amounts to about $14,000. Medicare pays about $9,000 - $10,000 , my BCBS supplement pays a portion of the remainder. I pay nothing. I presume the cancer center writes off the rest. I don’t pretend to know how this money game works, all I know is that my supplement plan is worth way more than it’s worth in gold. And my premiums are nothing compared what is being paid on my behalf.

[KMac1969]

I get IVIG every 4 weeks. It is very expensive. $32,104 every 4 weeks. I do have insurance.

It will depend on your IGG numbers. If you are in the normal range, I highly doubt your insurance will cover it, nor would your doctor recommend you for the infusions. Simply not needed.

My situation was pretty bad. I was diagnosed in 2014 and by the time I started my infusions, my IGG was around 300. I started in Oct 2019. It takes about 6 hours. Afterwards, I feel like I have the flu for a couple days. Fatigued (more than normal), sometimes a slight fever.

It is not something you request, like a shot.

[Big_Dee]

Hello Snickers23

If I were concerned about vacation trips incurring an illness, I would forego the vacation or travel by car and avoid large crowds. Have fun.

[GargR]

Hello Snickers 23I am from India. IVIG infusion is needed, as my haematologist says, in case of either of the two i.e. if IGG drops below 200 or the total of the three that is IGG+IGA+IGM comes below 400, and secondly in case you suffer from infection, of any kind, atleast for six months in a year.

Wish you would not need IVIG infusion for the risks and cost involved.